diagnosis update - sucrose intolerance (CSID)
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- เผยแพร่เมื่อ 20 ก.ย. 2024
- The next episode of my diagnosis journey. We've made some great progress and I am hopeful for the future of my tummy! Thank you so much for following along - I hope these videos helped someone feel less alone on their own journey.
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@jennythefoof
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Please keep in mind that I try to remember all the information I'm told by professionals, but I am not one myself, so always double check information for yourself.
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Hey, I'm really unsure why your dietitian told you that eating sugar with fructose malabsorption is okay. I just wanted to make sure for people reading this that sugar is 50% fructose - meaning that small amounts of sugar are alright (I try to eat products with less than 3g in 100g), but everything above is not digestive for most fructose intolerant people. Drinking lemonade should be avoided in any way even without sucrose intolerance.
Of course this is different from patient to patient, but I wanted to clarify this.
Good luck on your journey 🍀
I’m in the fb group called “hereditary fructose intolerance / fructosemia” and the ppl in the group are really knowledgeable I recommend double checking with them as it sounds like your doctor has no clue
Oooh that sounds like a great resource! I've actually learned that I don't have fructose intolerance but sucrose, but I'll look to see if people have a group for that!
I'm 35 & just got diagnosed with CSID. I started to get symptoms really bad 4 months ago & went to the GI. They did an endoscopy. This really sucks to go thru. I went on a Keto diet & it works well for me. I do feel your pain. Best luck to you.
Keto worked great for me. I am now more ketovore. A lot of fish, meat, chicken. Very great results. Dietitians kept having me "experiment" with foods. No more trusting them.
I’m so glad to hear you’ve gotten some relief. It’s good you have a lawyer in the family to help with appeals. I’ll ask around my disability networks & see if I know anyone else with CSID, & point them to your new Instagram if I find anyone. 💛
It’s actually the opposite, it’s when the fructose exceeds the glucose then that exceeding about is left to ferment undigested in the intestines.
Going carnivore changed my life, very recently, if you do it right it’s a good diet. Meat and fish. Healthy fats. With limited vegetables and even then only the ones with low/no sucrose (Napa cabbage for example) . Believe me, it’s worth the hassle.
PS. Moringa tea .
I was diagnosed csid as well and trying to figure this whole thing
How was your experience doing the sucrose test? I am nervous it will make me very sick!!
Unfortunately, it did make me sick, so I'd definitely schedule it on a free day so you can recover after! It's unpleasant but the information was worth it for me.
@@jennythefoof Throwing up or just unwell lol? Trying to prepare for mine haha.
Oh just unwell!! No throwing up but I was stuck to the toilet for a while hahahaha
Did you ever end up checking for small intestinal bacterial overgrowth?
You say you found you did not have congenital SID. So do you have acquired SID? If you still need the Sucrose, I hope you keep pushing for it. You certainly deserve relief.
I do not have Hereditary Fructose Intolerance, but I do have Congenital SID. Thank you for your support!
Hang in there Jenny!
Thanks Jenny. Just found out I have issues with Maltose. Any ideas how to approach this, cut out starches and grains for life?
Oh gosh I'm not sure - I highly recommend seeing a gastroenterologist and/or dietician that specializes in food intolerances! Wishing you the best of luck, and please share any info you learn! Currently trying to suss out if I have starch issues as well... it's tough!
Hey, I was just wondering how your CSID journey is going
You're so sweet, thank you for asking! Still on the journey - working on an update video. Stay tuned!
Who is your nutritionist ?
Have you got maltose intolerance too ? How did you find out it's genetic ? I've heard different things including that it's sometimes impossible to tell if it's genetic or not without doing a proper test to confirm. I was diagnosed with sucrose and maltose deficiency from an gastroscopy biopsy which gave readings of low levels of maltase and sucrase. I don't believe it is genetic as it didn't affect me until around 30 But I have been told by some people it still could be genetic but didn't affect me until later in life. Do you know where I can find info on if this is right or not by any chance please ?
I have issues with Maltose. Any ideas how to approach this, cut out starches and grains for life?
I'm currently doing experiments to see if I have maltose intolerance! I'm not sure about the specifics of genetic intolerances, I've had my intolerance (unknowingly) since before I can remember, so that's one of the reasons I know mine is. If your body lacks the enzyme, I would guess that means it's genetic? Not sure. I'm also not sure the treatments look different genetic vs not, so that may be why doctors are less keen to spend the money on tests to find out. Would definitely ask a professional! Best of luck to you - so sorry I couldn't be of more help.
Go carnivore man, believe me it’s worth it. Been on it two weeks. Same diagnosis as you. Hit me up if you need advice
Oh no starches? 😢 I am fine with sourdough and basmati rice
♡
Can you eat one tomato on its own?
I can! Tomatoes are no problem for me
@@jennythefoof same! Hmmm the admin of that group says the fructose intolerant ppl shouldn’t have tomatoes. But I’m starting to question if it’s fructose or sucrose for me. I think my symptoms are the same as yours. Tomato’s have zero sucrose in them
19:58 gamechanger